November 20, 2001

A New Generation: Teenagers Living With H.I.V.

By LINDA VILLAROSA

Hydeia Broadbent, 17, does homework as her mother, Patricia, schedules speeches. Because of her illness, Hydeia started her formal education in the seventh grade.

Kevin Moloney for The New York Times

Alora Gale, 15, gets a hug from her father, Gary, as she prepares to leave on a ski trip.

On the surface, Alora Gale of Boulder,
Colo., is an average teenager. A sophomore
at Boulder High School, she likes school and
for the most part does well. She volunteers
as a peer counselor at school, hopes to get
her driver's license next month when she
turns 16 and is looking for a part-time job to
help finance frequent trips to the mall.

But unlike most teenagers, Alora seems
cautious, wary and fragile. She has good
reason. In 1993, her mother, Linda, was
found to have
AIDS. Tests
showed that
Alora and her
younger brother
had also been infected, almost certainly while in their mother's womb. In 1995, at age 10, Alora watched
her mother's slow, painful decline and
death.

"Losing my mom was really hard," she
said. "But the hardest part may have been
that this disease that was killing her was
also in my body."

Still, Alora insists that she is an ordinary
teenager and wants to be looked at that way.
She takes several antiretroviral medications twice a day, keeps track of her viral
load and T-cell count and endures frequent
coughs, colds and doctor visits, with little
complaint. She is happy to be alive. "I have
the same life as any other teenager pretty
much, except AIDS is part of it," she said.

Alora is part of the first generation of
children born with H.I.V. to reach adolescence. In the past, most babies born with the
virus had little hope of living long enough to
enter high school.

According to data from the Centers for
Disease Control and Prevention, before the
mid-1990's children with H.I.V. lived to an
average age of 9. But thanks to breakthroughs in antiretroviral medication, since
1996 the average age has risen to 13 to 15
and is going up. There are now 2,400 adolescents who were born with H.I.V. infection,
and thousands more who will turn 13 over
the next five years.

Experts say the prognosis for these teenagers looks hopeful. "As long as they take
their medication, the vast majority should
live," said Dr. Edwin Simpser, chief medical officer for St. Mary's Healthcare System
for Children in Bayside, N.Y., which provides care for nearly 400 children with
H.I.V. or AIDS. "How long they are going to
live, we don't know."

Dr. Donna Futterman, the director of the
Adolescent AIDS Program at Montefiore
Medical Center in the Bronx, said: "When I
first started working in AIDS in the early
80's, it was clear that in children, this was
only a pediatric disease. But now there are
so many, many children living longer than
we ever thought possible, and even becoming adults."

Despite their resilience, many of these
children have problems similar to those of
other children living with chronic illnesses.
Some are sick all the time, often with side
effects from their medications. This can
lead to missed days — or years — of school,
and restricted social lives. Some have emotional or neurological problems related to
the disease.

"The medications will always be there for
these kids," said Dr. Joseph A. Church,
director of the Children's AIDS Center at
Children's Hospital in Los Angeles, "so what
we have to do is spend time talking about
dating and relationships and the futures
they didn't think they were going to have."

Many infected teenagers have had extremely difficult, fractured lives.

Dr. Futterman calls this group particularly vulnerable. "Many have lost their mothers, so they have to deal with that tremendous sadness," she said. "They may have
also lost other friends who were H.I.V.-
positive. The roots of trauma are deep in
their lives."

Dr. Church said: "Well over 50 percent of
the children we see are cognitively impaired, sometimes with significant learning
disorders or emotional disturbance. It's not
always the result of the virus doing brain
damage. Many of these children are products of pregnancies that weren't optimal.
The brain can take hits when there is prematurity or exposure to drugs in uterus."

Hydeia Broadbent, 17, of Las Vegas is an
accomplished public speaker who has won
numerous awards and accolades for her
AIDS activism. She even has a foundation in
her name. But privately, she struggles with
a fickle short-term memory, a result of
H.I.V.-related brain damage. Hydeia was
also very ill as a child, and did not attend
school until the seventh grade. She is now in
a special program at Odyssey High School,
which allows her to do most of her schoolwork at home via computer.

"My daughter didn't have a formal education because of her illness," said Hydeia's
mother, Patricia. "My priority was not
school, but keeping her healthy for the time
she had. I truly didn't believe she'd even be
here, so I didn't think anything she'd learn
would be important."

Some of the teenagers were so sheltered
by worried, well-meaning families that they
now find it difficult to cope with independence.

Dr. Robert Johnson, director of adolescent and young adult medicine at the New
Jersey Medical School in Newark, said,
"Many of these kids have been so overprotected, often by grandparents that are now
raising them, that they don't know how to
act independently in the world."

Gary Gale, Alora's father, said he had
struggled to strike a balance between caring for his children and turning them into
spoiled brats.

"When I thought my kids were going to
die, I tried to make every birthday, every
holiday, every minute of their lives special,"
said Mr. Gale, who is director of the National Pediatric AIDS Network, a nonprofit support and information organization. "But
now that they're teenagers, I'm more careful. I don't want the things I did early on,
that I thought were necessary, to make
them into rotten adults."

Some families sheltered their children
even from their H.I.V. diagnosis.

"We have three children between 14 and
17 who do not know their diagnosis," said
Virge Pina-Rochd, a social worker and manager of the Pediatric-Maternal H.I.V. Program at Beth Israel Hospital in New York
City. "They might tell the children they are
coming in because they have anemia and
that the medicines they have to take are
vitamins. Often the children really do know
or suspect the truth about their H.I.V. status, but they keep the secret because they
don't want to hurt the grandmother or auntie or foster mother who's the caregiver."

A 17-year-old high school senior
from Brooklyn, who asked that her
name not be used, found out that she
was positive by accident. She confronted her grandmother after seeing one of her drawings hanging in
her social worker's office with the
label "program of children infected
by AIDS."

The girl said: "I asked my grandmother, `Do I have AIDS?' and she
said, `Yes.' Before that I believed her
when she told me that I was going to
the doctor so much so I could stay
healthy."

Some teenagers with the virus apparently rebel by refusing to take
their medication. Others simply cannot stick to the complicated drug
regimens.

"I see many young people who
can't handle the medication," said
Kate Muldowney, a social worker at
Montefiore's Adolescent AIDS Program. "In the past two years, we've
seen a number of deaths among peri
natally infected kids who had lived a
very long time, but just couldn't stay
on the medication."

For the teenagers themselves, the
most immediate concern may be the
pressure of keeping their infection a
secret or worrying what their peers
will think if they disclose it.

"Only my closest friends know,"
said the 17-year-old girl from Brooklyn. "I kept it to myself because it's
none of anybody's business. I don't
care what people think really, but I
hear what they say about people. I
hear them talking about girls who
got pregnant, saying they like to
sleep with so many men. I got this
thing from my mother, but still, can
you imagine what they'd say about
me?"

A 15-year-old ninth grader, also
from Brooklyn, says that except for
his immediate family, no one knows
he is H.I.V.-positive. He takes medication in the morning and at night,
and rarely has friends over to his
house. "I've heard kids talking, saying things like `If I had AIDS, I'd kill
myself,' said the boy. "Telling someone is the worst thing I can think of."

Disclosing one's H.I.V. status to a
boyfriend or girlfriend — or a potential one — is especially tricky and
stressful.

"Young people want love just like
everybody else, but they are afraid
that this big secret, their H.I.V.,
makes them unlovable," Dr. Futterman said. "It's hard for them to
know when and how to disclose to a
potential sex partner, or even a potential friend, because of the intense
fear of rejection."

The 17-year-old Brooklyn girl said
she was so afraid to speak the words
and tell her boyfriend that she wrote
a note and handed it to him. "I wrote,
`Since I was born, I've had H.I.V.,'
and handed it to him," she said. "I
was so scared of what he'd think. But
he ripped up the paper and hugged
me and said that it wouldn't change
the way he thought of me as a person."

Arlo, a 15-year-old from Oak Park,
Ill., who asked that his last name not
be used, said he felt relieved that he
revealed his H.I.V. status to a girl he
was beginning to date.

"We were really, really good
friends, and I told her about a month
ago because I trust her and I tell her
absolutely everything in my life," he
said. "We were just talking, and I
said, `I have something to tell you: I
have AIDS.' She just said O.K. Now
that we are starting to go out, I'm
happy that she already knows and
accepts it."